Do you remember the blog post from my birthday, July 27? I blogged about my new birthday toy – information cards about EA/TEF, the condition our son had at birth. That post was a spin off from an older post about Katie Wetherbee’s report about autism meltdown cards. Well, recently someone left a the comment about a similar card for a condition called Rett Syndrome.
Meet Ingrid Harding
The comment was left by Ingrid Harding, mother of Sarah, who lives with Rett Syndrome. Ingrid is also founder of the website Girl Power 2 Cure, Inc. It has to be one of the cutest websites ever, and it’s packed with information about Rett Syndrome, a “debilitating neurological (movement) disorder that predominantly affects females. ”
The Purple Card
In her comment, Ingrid included a link to the website page about The Purple Card, her version of the Meltdown Card for kids with Rett Syndrome. They even personalize the cards by including the child’s picture, if the parents so desire. Pretty cool, huh?
Any Other Great Ideas Out There?
So now I’m wondering how many other fantastic ideas for educating the general public about special needs are floating around out there. You probably have all sorts of good ideas. Now’s your chance to share them, like Ingrid did. How do you tell people about your child’s special need? How do you handle kids and adults differently? What works? What doesn’t?
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You’re welcome, Ingrid. Thanks for your example!
Jolene
Thanks so much for the shout out for our site and Purple Cards! We love the stories that come in weekly about how they have been used. At a parade once, a family did a “Girl Power” float and tied lollipops to the cards and threw them out to the crowd with all the other stuff getting thrown — love a little education in with parade treasures! 🙂
Oh Amy, Kylie is so blessed to have you and Dan as her parents!
Jolene
Dan and I recently spoke to a University Class about this very issue. We tell people that Kylie (and our family) EXPERIENCES Autism. (we don’t like the label: “Autistic kid”, nor do we like the Mug shot: “she HAS autism”)…
The word “experience” makes it a neutral situation (neither good or bad) but will certainly be adventurous and memorable.
When asked if it was ok to talk about Autism in front of her, we giggled and said “Of course, there is nothing WRONG with her… God MADE her this way… she is perfect in his eyes and ours.”
Kylie is also adopted. We tell her “Adoption is NOT second best, Adoption is GOD’S best”
God loves her so much he took care of ALL the details and she has MANY people who love her (and yes, just the way she is).
To us, the word “Autism” is no more shameful than the word “brunette” or “blue eyes” or “tall” – it’s just a part of who she (and our family) is. Some people like to wear dresses and some people like to line up toys… we are all unique, but better yet, we ALL have a designer and we were INTENDED for His Glory….
I want my girl to thrive in the knowledge that she was created ON PURPOSE!! =0)
I AM SO GLAD SHE WAS!!
Boy, Jolene, it would be great to have a RED one like this for hemophilia that says, “No, I’m not beating my child! His disorder makes him rather colorful sometimes.” I’ll have to share this with NHF!